Caregiver Resources
The Patient and Family’s Council’s (PFC) Executive Committee recognizes the important role of the caregiver, not only to the individual with chronic kidney disease but also to the entire family. In recognition of that role, the PFC’s Executive Committee created a special sub-committee dedicated to identifying resources to support the care giver. In addition to identifying resources, the sub-committee also created a special award to honor an outstanding caregiver. To find out more about this award click here.
Below is a list of resources that will assist the caregiver in identifying services that he/she may need to meet the challenges and rewards of their special role:
Administration on Aging
Administration on Aging offers elders, families, caregivers, and professionals’ information and resources on a variety of aging-related topics. The information will help you become more familiar with issues affecting older adults, and the services and opportunities available to assist them.
http://www.aoa.gov/
American Association of Retired Persons (AARP)
AARP is dedicated to enhancing quality of life for people age 50 and over. AARP leads positive social change and delivers value to people through current information, advocacy and service.
http://www.aarp.org/
Family Caregivers Online
Family Caregivers Online is an educational and informational resource for anyone who helps an older spouse, parent, relative, friend, or neighbor. This site provides online education, organized system of links to over 1,200 sites, FAQs, phone numbers, online newsletter articles, and a site for employers and human resource professionals.
http://www.familycaregiversonline.com/
“Family Reunion” Health Guide -
Help Your Family Make the Kidney Connection
Many of us know family members who have diabetes or high blood pressure or both. What you may not know is that these conditions are the two leading causes of kidney disease. That’s why it is so important to talk with family members about what they can do to keep their kidneys healthy.
The Family Reunion Health Guide, developed by the National Kidney Disease Education Program, will help you talk to your family about the connection between diabetes, high blood pressure, and kidney disease at your family reunion.
Call 1-866-4 KIDNEY (1-866-454-3639) or visit www.nkdep.nih.gov/familyreunion to get the free Family Reunion Health Guide.
Learn About ICE - Cell Phone Emergency System
If you are on dialysis treatment, chances are you're often freezing while others are opening windows. Well, now, ICE, might actually save your life. An acronym for In Case of Emergency, ICE is an entry in your cell phone memory that would give doctors an emergency contact number in case you are temporarily unable to communicate or advocate for yourself. The National Kidney Foundation recommends that all people with kidney failure program an ICE entry into their cell phones in case of hospitalization or other medical emergencies. Read the New York Times article, "ICE on Cell phones: An Acronym for Emergencies".
Lotsa Helping Hands:
The National Kidney Foundation’s (NKF) People Like Us initiative, a growing movement to empower, educate and enable people with chronic kidney disease (CKD), transplant recipients, donors and family members, has partnered with Lotsa Helping Hands to provide an online resource for its many care givers.
Lotsa Helping Hands is a simple, immediate way for friends, family, colleagues and neighbors to assist loved ones in need. It is an easy-to-use, private group online calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other necessary tasks. There is no cost to your family to use this system. For more information on how this site works visit or to set up an account visit: www.kidney.lotsahelpinghands.com
National Center on Caregiving: Family Caregiver Alliance
National Center on Caregiving is a public voice for caregivers offering assistance and support through education services and research . FCA offers valuable resources and publicly-funded caregiver support programs at national, state and local levels.
http://www.caregiver.org
National Family Caregivers Association
NFCA supports, empowers, educates, and speaks up for over 50 million Americans who care for a chronically ill, aged, or disabled loved one. NFCA offers educational materials, tips and guides, for improving the overall quality of life of caregiving families and minimizing the disparities between family caregivers and non-caregivers.
http://www.nfcacares.org/
National Organization for Empowering Caregiver
National Organization for Empowering Caregiver provides resources assistance, education, support and referrals for informal family caregivers, as well as promoting public awareness about the realities of caregiving.
http://www.nofec.org/
